t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.

9.09.2014

...But at least I have these little angels with me. I took this picture during a fabulous rainstorm this morning. It has been a crazy summer of rain. In this picture, we see them in a single dimension brimming with health, vitality and beauty. We spend a lot of time looking at others in a single dimension. Ironically, singularity emodies both truth and deception. These children are brimming with health, vitality and beauty. But three of these children have PCD. A disease which ravishes their lungs. A disease we spend hours a day treating in an effort to halt its progression. Two of them have hospital stays, surgeries and IV therapies dangling over their heads in the near future. But they look so healthy, right? There can't be anything to worry about...or so the well-meaning tell me over and over. The best way to support is to acknowledge grieving and offer a listening ear.

I've said it before, but I think there has to be some sort of law of compensation. If you are given a nasty disease to deal with when you are born, and for the rest of your life, you are given an added measure (a huge one) of sweetness and depth. I know it is true with my children. And the 3 of us born without it, that same nasty disease strips us of ambivalence and clothes us with keen awareness. We are better too because of it.

There are a lot of times, in the moment, when I question if taking on the education of my children at home is really what I want to do. It often pushes me to emotional exhaustion...Invariably, I conclude yes. Most days I spend 5 hours on the piano, directing school from the bench next to a practicing child. But the vigorous study of music has equipped my children with an amazing ability to work through very difficult things, which are not fun in the moment, for a greater, delayed reward of mastery. It's taught me that same lesson. I never imagined the role music would play in my life and in my children's, but I am grateful for it. It was a driving force in bringing Ellery back to life after a severe prolonged illness. I feel music is poised again to pull our family through some rocky times ahead.

8.26.2014

I have certainly been out of touch, but our family is entering cyberspace a bit lately :) You can follow Ellery's life journey at www.Elleryslife.com She is full steam ahead in chasing down her dreams. It's pretty fun to watch as a mother, and exciting to support a child who is so driven. She was scouted to be a model by an amazing child model photographer a couple months ago. That led to a lot of work with the clothing brand Persnickety. As they got to know Ellery, and her story, they fell in love with her. In just a couple weeks, in their upcoming magazine, and online, they are doing an entire feature on Ellery. She is the Persnickety girl of the year. She is so excited for this opportunity. Her health has been in a bit of a decline again, unfortunately. As well as our sweet little Emmett. We are fighting and doing treatments like crazy to keep these kiddos out of the hospital and off IV's. But that just might not be possible. We feel so grateful Ellery has so much positive attention right now. She has a real reason to stay very strong, through the difficult times that could be ahead.

She's working on recording songs, music videos, ballroom dance team, and still doing flute and piano! We try to squeeze some math and writing in along with all the fun stuff ;)

My schedules continue to be so complicated I have to take a picture of my spreadsheet and keep it on my phone! I never fully figured out the summer.

I've learned so much the last year. I feel like a different person in so many ways. With all certainty I know that life can change in an instant.

Ellery wrote this poem when she was sick last year and it just sums it up perfectly.

The Flower

by Ellery

A flower dies fast and grows back slowly.

Hard things come fast and are recovered from slowly.

At the time they might seem out of order.

You may be feeling depression, pain or hurt.

But through time they always come back.

Stronger than before.

If Ellery tells me she wants to write music and try to make it big. I'm not going to stop her. In fact, I'm even going way out of my comfort zone and putting myself on facebook and instagram to do everything I can to help her.

My other children are still finding their ways. Callista is the best friend I've ever met. She has a way of winning hearts that is just amazing. We put that little girl in any situation and she thrives. Emmett is still my angel with his perfect temperament and curls. He has also turned into quite the gymnastics star. My little Berkeley is just about as sweet as they come as well. I just want to eat her up. For the complicated things 3 of my 4 kids were born with, I think somehow God compensated by just making them nearly perfect in every other way.

The reality of last year has kept a heavy weight on Brent's and my heart. While in some ways we have healed, we can never be the same again. That is an okay thing. In Ellery's words, we are stronger than before. But I know the disease that seemed to just lie quietly rears its head in very real ways now. The reality of a progressive disease is never fun.

But all that being said, we are attacking life with a vigor you would not believe!!

Keep an eye on the Persnickety Website and hop on and order their catalogue if you have a chance!

2.02.2014

It's been an intense 3 1/2 months. Several days after my last post, Ellery became very sick. That episode triggered a cascade of events that stretched our family almost to the breaking point. From where I sit now, I can calmly relate these events. We aren't completely out of the water, but through lots of research, prayers, fasting, and course corrections, we are in a much better place.

To distract me, I started a new blog several days ago, called Pretty Darn Close? No More! www.prettydarnclose.com It's purpose is to help me reach some of the goals that have fallen through the cracks. I'm journaling my food and workouts everyday and sharing something I've learned about nutrition, keeping lean, or fitness.

It's really a selfish blog. I need accountability. I'm tired of a yo-yo body composition. I want to get lean and stay lean. It's not about being healthy, but about overcoming getting so close to my goals and falling short.

The most successful people are transparent, accountable, and visualize themselves succeeding. That's what I'm doing.